Idiopathic Pulmonary Fibrosis Progression Veracyte has just signed a deal with Yale University which will help them develop the very first test which can predict disease progression for idiopathic pulmonary…
By Danielle Bradshaw from In The Cloud Copy 19-year-old Marky Jaquez’s feet have never touched the ground because the sensitive skin of his soles would tear away. As such, he…
A recent study published in Acta Neuropathologica discusses the importance of symptom and health management for people with progressive supranuclear palsy. The rare condition, which causes neuronal degeneration, has no cure. But…
It is no secret that COVID-19 has turned life as we know it upside down. It has changed everything from hanging out with friends to working to going grocery shopping.…
A study in the American Journal of Hematology recently presented some troubling findings on the relationship between Fanconi anemia and allogeneic hematopoietic stem cell transplantation (alloHSCT). Patients who participated in alloHSCT before achieving…
For those in the rare disease community, you know that it can take a long time to reach a diagnosis for your condition: an average of 4.8 years! But upon diagnosis, many…
Disposable Scopes Disposable scopes are exactly as they sound. Medical scopes utilized for the bladder, lungs, colon, etc. can be made reusable or disposable. Disposable scopes allow faster and more…
A recent news release on BioSpace shares how GTX-102, an investigational antisense oligonucleotide drug therapy for Angelman syndrome, was granted Fast Track designation from the FDA. The therapy, created by GeneTx…
Ana Pina from the Centro de Estudos de Doencas Cronicas at NOVA Medical School in Portugal, and her colleagues recently published an innovative study regarding the diagnosis of familial hypercholesterolemia (FH).…
The last decades have seen significant progress when it comes to medical care for rare diseases. Tasks doctors once slaved over were transformed with better speed and efficiency by modern…
Edwin Chapman, who works at the University of Wisconsin-Madison, has been studying neurons for most of his career. He and his team recently made a discovery regarding SYT1-associated neurodevelopmental disorder.…
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